Are you a Caregiver?

By Florence Rosner for Aging in the News, WI Dept. of Health & Family Services

Ellen gets up before her husband and children and goes to her mother’s room where she finds her awake but still in bed. With a hasty “Hi Mom,” Ellen helps her mother get out of bed, into the bathroom and then dressed, using the walker her mother needs since her stroke. Settled in an arm chair watching the morning news, her mother waits while Ellen dashes down to the kitchen and prepares a breakfast tray that she takes upstairs. After attending to her mother, Ellen focuses on her children. Her husband has helped them dress and has started their breakfast. He leaves for work as Ellen gets the children through breakfast and ready for school. A last look in on her mother and Ellen’s off with the children, dropping them at school and going on to her own job.

At lunch time, Ellen drives home, fixes lunch for her mother, helps her into the bathroom, and then down the stairs for the afternoon. Resting on the sofa in the living room, she can nap or watch TV. Since her stroke, there is not much more that she can do. Physical therapy and massage have helped only to a point. Ellen munches a sandwich on her way back to work. After work, she goes home to serve the dinner she prepared the night before. The family does the dishes together, and then her husband helps their two girls with homework while Ellen helps her mother bathe and get ready for bed. She then prepares the next day’s meals. And so it goes every weekday since the stroke. On weekends, Ellen tries to plan a family outing: a movie with the girls, a trip to the zoo, something besides cleaning and grocery shopping. But she feels guilty leaving her mother home alone again. Ellen feels that the whole family is on a treadmill, almost never relaxed; even the weekends involve a schedule as they cannot leave mom for more than a few hours at a time. Ellen finds it a hard way to live.

George helps his wife who has Alzheimer's disease and can no longer take care of herself. He does the cooking and house cleaning. In fact, he does everything that she used to do. He takes her grocery shopping and for walks, but things do not always go well as she is often unreasonable and no longer relates well to people. He cannot leave her for a moment as she tends to wander and may get into an unsafe situation. Watching her mind deteriorate is extremely painful for George. As his wife’s ability to function declines, his stress level rises. He is depressed; this is not the life he expected for their retirement years.

Jim takes his father to the doctor, grocery shopping, and to the barbershop. Dad is not sick but at 89 is becoming frail. He manages quite well by himself in a small apartment that he prefers rather than living with Jim and his family. He is thinking about an assisted living facility but feels it is too expensive. As time goes by, Jim finds his father needs more help. Jim is rethinking his commitment to his family as he feels torn between the two households.

Are Ellen, George and Jim caregivers? No, they say this is what you do for family and friends. But of course they are caregivers—from Jim who feels that he should do more, to Ellen and George who do a great deal. They are among the one in four families in Wisconsin who are involved in family caregiver responsibilities. While helping others is rewarding, it can also be emotionally and physically exhausting. Most of us are not trained or fully prepared for such lifestyle changes; sometimes the caregiver falls ill or becomes depressed. To prevent this, longtime caregivers have learned the value of getting help early on, before becoming overly stressed or exhausted. They tell new caregivers, “Accept help from others so you can take time for yourself. Try to continue doing things you enjoy.” But this simple advice can be hard to follow when caregivers lack support and don’t know where to turn for help.

If you are a caregiver, call your local aging office and ask about the family caregiver services and supports available through the federally funded National Family Caregiver Support Program, the state funded Alzheimer’s Family Caregiver Support Program or the local Alzheimer’s Chapter. New is the Chronic Disease Self-Management Program that teaches one how to improve health and ability to function. It can be useful to both caregivers and those who are receiving care.

Through your county aging office, you will be put in touch with a variety of services to improve the life of both the person receiving the care and the caregiver. Many counties offer adult day care—a place where the frail or ill person can spend the day participating in activities, socializing with others, having a meal—to the extent that they are able. Adult Day Care services give the caregiver some respite from caregiving duties. There are also caregiver support groups that offer advice and education about specific illnesses, such as Alzheimer's, so that caregivers can learn how best to interact with the person they are trying to help. Caregivers will discover that there is help and that they are not alone.